For some 9/11 first responders, the memories 'are just not there' after toxin exposure

The memory issues began subtly for Sept. 11 first responder Thomas Lenzo: A forgotten name, a missed appointment.

Now the retired NYPD detective, who has no family history of dementia, said he hardly remembers the details of his time working on the pile at Ground Zero after the nation’s worst terror attacks.

"I feel like I'm very forgetful. I go out with fellow cops or friends from my childhood and I don't remember the stories. And, I don't remember being down there that day," Lenzo, 51, of Brooklyn, said of Ground Zero in an interview days before the 23rd anniversary of the attacks. "I remember that I got there. And I remember little things about the time afterward. But I don't remember a lot of things." 

Lenzo, who retired in 2013 because of health problems related to his Sept. 11 response, is not alone. 

He is among more than 5,000 Sept. 11 first responders — predominantly Long Islanders — who Stony Brook University researchers studied during a five-year period to determine if there was a link between exposure to the toxic dust released after the collapse of the World Trade Center and early onset dementia.

The study, which evaluated patients from the Stony Brook World Trade Center Health and Wellness Program and was published in June, found 228 of the first responders had developed some form of dementia. Most had worked at Ground Zero without personal protective equipment and while performing dangerous activities, including digging through the toxic debris.

The study's findings included that the incidence of dementia before the age of 65 was higher in responders who were more severely exposed to the air pollutants, compared with responders who reported no dust exposure or used personal protective equipment. It found use of PPE might help prevent early onset dementia in the future among people exposed to an uncontrolled building collapse. 

Among the general population, experts would expect roughly five cases of dementia out of 5,000 similarly aged people, Sean Clouston, a professor of public health at Stony Brook who co-led the study, previously told Newsday.

The average age of the participants at the start of the study was 53 years old. 

Stony Brook officials expect to use the study and ongoing follow-up examinations as the basis for an application to the federally run World Trade Center Health Program to include dementia as a covered medical condition, Clouston said in a recent interview.

That program provides free treatment and medically necessary monitoring by program providers of World Trade Center-related conditions for those directly affected by the 9/11 attacks in New York, at the Pentagon and outside Shanksville, Pennsylvania, where one of the hijacked planes crashed. 

While more than a dozen forms of cancer, traumatic injuries, airway and digestive disorders and mental health issues are covered by the program — allowing patients to avoid often expensive medical bills — dementia isn't a covered condition.

"In order for our findings to have an impact on these victims' lives, that's a critical next step," Clouston said.

'I'm on borrowed time'

Steven Doyle, 57, of Manorville, was a member of FDNY Engine 207 in Brooklyn on Sept. 11 but not on duty at the time of the attacks. By the time he arrived in lower Manhattan, his firehouse already had lost four members in the collapse of the Twin Towers.

Doyle spent the next several days assisting in the rescue and recovery operation — without a mask or other protective gear.

Doyle said in subsequent years he experienced gastroesophageal reflux disease, sinus problems, sleep issues and abnormalities in his lungs and esophagus linked to Ground Zero exposure that forced him to retire in 2011 from his latest assignment as an FDNY fire marshal. Before joining the FDNY, he worked as an NYPD officer for nine years.

Doyle, who was part of the Stony Brook study, said his memory has become spotty in recent years.

The retired firefighter said he momentarily would forget what he was supposed to retrieve from the pantry or how to get to a destination he'd visited a hundred times before. Names of FDNY colleagues he's known for two decades would come up in conversation but Doyle said he'd have trouble putting a face to the name.

"I know this stuff happens to everybody," said Doyle, who has no history of dementia or Alzheimer's disease in his family. "But sometimes it's just a little more than it should be."

Doyle is unsure how much of his mild cognitive issues are the typical byproduct of getting older and what can be directly attributed to his work on Ground Zero. He's undergone neurological and blood tests, brain scans and mental acuity exams and is eager to continue further evaluation.

"You don't know if you're being obsessive about it or whether maybe it is going to happen," Doyle, who is married with two children, said of long term dementia concerns. "But, what can you do? I'm on borrowed time. I could have easily been down there [at Ground Zero] that day."

Benjamin Luft, co-author of the dementia study and director of the Stony Brook World Trade Center Health and Wellness Program, said cognitive issues can occur as individuals gets older, but significant issues are rare before the age of 65.

"We began studying these patients when they were in their mid-40s, and we've been following them over time. And now we're seeing patients with very significant cognitive problems," Luft said, adding that many of the first responders who participated in the study are sophisticated in terms of their education and skill level, making their declines even more significant.

'Deteriorating little by little'

In the weeks after the terror attacks, Lenzo, then an NYPD detective based in Brooklyn, said he was stationed at Ground Zero conducting search and recovery operations — only occasionally wearing a mask — as well as at the Staten Island landfill where Ground Zero debris was sent, morgues and bereavement centers.

Lenzo, who now works in private corporate security in Manhattan, already has paid a steep price for his efforts. Doctors diagnosed him with skin cancer, sleep apnea and gastroesophageal reflux disease connected to his work at Ground Zero.

"I feel like I'm deteriorating little by little," Lenzo said.

The memory issues, Lenzo said, crept up on him slowly, and he can't quite recall when they began. 

These days, he'll go to a restaurant with his fiancee and forget that he met a server the week prior. Sudoku puzzles he used to breeze through have become a difficult challenge. And he'll ask his fiancee the name of someone at a party — the same question he'd posed to her a half dozen times before, Lenzo concedes.

To combat the deterioration, or at least disguise it, Lenzo said he's taken to writing notes on his phone.

During a recent visit to a Red Robin, he jotted down the name of the bartender. "Barbara," he wrote, "was blonde and with tattoos." It was a little hint in case she ever serves him again.

"It's frustrating," Lenzo said. "Sometimes I don't remember meeting somebody or their names or memories from childhood, or even from my law enforcement years. The memories are just not there."

By Robert Brodsky

robert.brodsky@newsday.com@BrodskyRobert

Robert Brodsky is a breaking news reporter who has worked at Newsday since 2011. He is a Queens College and American University alum.